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Georgiagirl88
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Hi JLynn,
I am sure you will find this site very helpful and supportive. Glad you're here!!
Michelle
I am sure you will find this site very helpful and supportive. Glad you're here!!
Michelle
Hello, and
welcome to CWE! You've found a wonderful place to be!
Mr B (Bernard) has made us an AWESOME home here. Lots of great things here, and tons of neat people, plenty of great information to be had, too.
Feel free to poke around in the house, ask questions, rant, rave, whatever you need to do. We'll be here for ya.
Take care!
Meetz
welcome to CWE! You've found a wonderful place to be!
Mr B (Bernard) has made us an AWESOME home here. Lots of great things here, and tons of neat people, plenty of great information to be had, too.
Feel free to poke around in the house, ask questions, rant, rave, whatever you need to do. We'll be here for ya.
Take care!
Meetz
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epilepsy related fear temporal lobe?
Hi guys
onder:
its so frustrating to me sometimes to not know why I am often in a state of fear, it usually doesnt make sense, and sometimes things, any event, big, small, or should be exciting or even happy, instead bring out rather a sense of impending doom in me instead. My brain and body react as if something terrible is about to happen, and it can quite embarrassing and uncontrollable. The neuro at the hospital and my follow up neuro both say that my mri report shows I have mesial temporal sclerosis, and I guess I am finally beginning to recognise some of the seizures. The thing I dont get is this nervousness, I remember having it before ever taking meds, but sometimes it seems worse now a days, so I dont think I can blame the medication. The scarring and atrophy are in my temporal lobe, so I am wondering if this is the cause, as I think I read somewhere that part of the brain is responsible for emotions. Mine is on the right, although thought to be possibly bilateral. The doctor didnt act shocked or surprised at all by my panic symptoms, and in fact said it is quite common with my type of epilespy. But still, it doesnt make sense to me. I just want to stop it. Sometimes it makes me feel like I am weak, as if I am mentally disfunctional because I do not have complete control over my thinking and emotions and reactions to some situations. I wonder if I have an emotional disorder along with the epilepsy? Does anyone else here experience any emotional reactions with their epilepsy that do not seem "normal" and/or not in control? I know I write too much, but I am about in tears today, I have somewhere publice I have to be this evening that I should be excited about, a chance to win big money, but instead I feel that sense of dread, maybe because I'm afraid I'm going to get those weird sensations in public, and I hate people seeing it, and thinking Im a freak, which I feel like one sometimes. Thanks for listening, let me know what you think, or if you can relate, and know of any way to help with this.
HUGE thanks for listening
JLynn
Hi guys
onder:its so frustrating to me sometimes to not know why I am often in a state of fear, it usually doesnt make sense, and sometimes things, any event, big, small, or should be exciting or even happy, instead bring out rather a sense of impending doom in me instead. My brain and body react as if something terrible is about to happen, and it can quite embarrassing and uncontrollable. The neuro at the hospital and my follow up neuro both say that my mri report shows I have mesial temporal sclerosis, and I guess I am finally beginning to recognise some of the seizures. The thing I dont get is this nervousness, I remember having it before ever taking meds, but sometimes it seems worse now a days, so I dont think I can blame the medication. The scarring and atrophy are in my temporal lobe, so I am wondering if this is the cause, as I think I read somewhere that part of the brain is responsible for emotions. Mine is on the right, although thought to be possibly bilateral. The doctor didnt act shocked or surprised at all by my panic symptoms, and in fact said it is quite common with my type of epilespy. But still, it doesnt make sense to me. I just want to stop it. Sometimes it makes me feel like I am weak, as if I am mentally disfunctional because I do not have complete control over my thinking and emotions and reactions to some situations. I wonder if I have an emotional disorder along with the epilepsy? Does anyone else here experience any emotional reactions with their epilepsy that do not seem "normal" and/or not in control? I know I write too much, but I am about in tears today, I have somewhere publice I have to be this evening that I should be excited about, a chance to win big money, but instead I feel that sense of dread, maybe because I'm afraid I'm going to get those weird sensations in public, and I hate people seeing it, and thinking Im a freak, which I feel like one sometimes. Thanks for listening, let me know what you think, or if you can relate, and know of any way to help with this.
HUGE thanks for listening
JLynn
I know that sense of impending doom well. If it occurs, it usually is a precursor to a seizure. I am not normally a depressed personality, so I know when that feeling comes, I know what might happen next.
Your fear of having a seizure in public is a fear that I remember from when I first started having seizures. I finally got past that, and I take a more relaxed attitude toward it now. I also allow myself to go places and enjoy things more now.
Your fear of having a seizure in public is a fear that I remember from when I first started having seizures. I finally got past that, and I take a more relaxed attitude toward it now. I also allow myself to go places and enjoy things more now.
Hi everyone, thanks for the welcome. I posted the following in the "kitchen" today, not sure if everyone checks in there thou. I am really desperate for communication with others on this subject. So posting it here as well. Please respond if you have or know of any info about this, or anything at all that might help! Thanks again
its so frustrating to me sometimes to not know why I am often in a state of fear, it usually doesnt make sense, and sometimes things, any event, big, small, or should be exciting or even happy, instead bring out rather a sense of impending doom in me instead. My brain and body react as if something terrible is about to happen, and it can quite embarrassing and uncontrollable. The neurologist at the hospital and my follow up neurologist both say that my mri report shows I have mesial temporal sclerosis, and I guess I am finally beginning to recognise some of the seizures.
The thing I dont get is this nervousness, I remember having it before ever taking meds, but sometimes it seems worse now a days, so I dont think I can blame the medication. The scarring and atrophy are in my temporal lobe, so I am wondering if this is the cause, as I think I read somewhere that part of the brain is responsible for emotions. Mine is on the right, although thought to be possibly bilateral. The doctor didnt act shocked or surprised at all by my panic symptoms, and in fact said it is quite common with my type of epilespy. But still, it doesnt make sense to me. I just want to stop it.
Sometimes it makes me feel like I am weak, as if I am mentally disfunctional because I do not have complete control over my thinking and emotions and reactions to some situations. I wonder if I have an emotional disorder along with the epilepsy? Does anyone else here experience any emotional reactions with their epilepsy that do not seem "normal" and/or not in control?
I know I write too much, but I am about in tears today, I have somewhere publice I have to be this evening that I should be excited about, a chance to win big money, but instead I feel that sense of dread, maybe because I'm afraid I'm going to get those weird sensations in public, and I hate people seeing it, and thinking Im a freak, which I feel like one sometimes. Thanks for listening, let me know what you think, or if you can relate, and know of any way to help with this.
HUGE thanks for listening
JLynn
its so frustrating to me sometimes to not know why I am often in a state of fear, it usually doesnt make sense, and sometimes things, any event, big, small, or should be exciting or even happy, instead bring out rather a sense of impending doom in me instead. My brain and body react as if something terrible is about to happen, and it can quite embarrassing and uncontrollable. The neurologist at the hospital and my follow up neurologist both say that my mri report shows I have mesial temporal sclerosis, and I guess I am finally beginning to recognise some of the seizures.
The thing I dont get is this nervousness, I remember having it before ever taking meds, but sometimes it seems worse now a days, so I dont think I can blame the medication. The scarring and atrophy are in my temporal lobe, so I am wondering if this is the cause, as I think I read somewhere that part of the brain is responsible for emotions. Mine is on the right, although thought to be possibly bilateral. The doctor didnt act shocked or surprised at all by my panic symptoms, and in fact said it is quite common with my type of epilespy. But still, it doesnt make sense to me. I just want to stop it.
Sometimes it makes me feel like I am weak, as if I am mentally disfunctional because I do not have complete control over my thinking and emotions and reactions to some situations. I wonder if I have an emotional disorder along with the epilepsy? Does anyone else here experience any emotional reactions with their epilepsy that do not seem "normal" and/or not in control?
I know I write too much, but I am about in tears today, I have somewhere publice I have to be this evening that I should be excited about, a chance to win big money, but instead I feel that sense of dread, maybe because I'm afraid I'm going to get those weird sensations in public, and I hate people seeing it, and thinking Im a freak, which I feel like one sometimes. Thanks for listening, let me know what you think, or if you can relate, and know of any way to help with this.
HUGE thanks for listening
JLynn
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What you seem to be doing is getting your self upset and you don`t need that, this is a very good triger for seizures. You have got to calm down some way. I do not like having seizure in publc, but hey they are going to happen weither we want it or not, that part of our life.
I do not have any idea when my seizures come on, i only now after i come to that i had a seizure. We do get worried, upset, nervous, our thinking not always there ( from seizures and all meds we take). I have headachs 24/7 from one of my meds. But i would rather live with this med and headach then chane again to another pill and my systm have to get use to new medication and also come off old medication. I have had my seizures for over 53 years and they still not under control and have no ideas when they coming on. My hands shake alot cause of all the meds i have taken and seizures. That is part of our life. It i am use to seeing my hand shake. When people mention it i say oh yea that from my seizure meds, and i leave it at that and walk away.
Please try and take it easy, those seizures are going to happen no matter where you are ( you can not control them). All you can do is try and stay calm and take your meds.
Nancy
I do not have any idea when my seizures come on, i only now after i come to that i had a seizure. We do get worried, upset, nervous, our thinking not always there ( from seizures and all meds we take). I have headachs 24/7 from one of my meds. But i would rather live with this med and headach then chane again to another pill and my systm have to get use to new medication and also come off old medication. I have had my seizures for over 53 years and they still not under control and have no ideas when they coming on. My hands shake alot cause of all the meds i have taken and seizures. That is part of our life. It i am use to seeing my hand shake. When people mention it i say oh yea that from my seizure meds, and i leave it at that and walk away.
Please try and take it easy, those seizures are going to happen no matter where you are ( you can not control them). All you can do is try and stay calm and take your meds.
Nancy
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Two threads you might find of interest:
http://www.coping-with-epilepsy.com...svirus-6b-mesial-temporal-lobe-epilepsy-1124/
http://www.coping-with-epilepsy.com/forums/f22/emotional-trauma-stored-body-520/
I merged the two threads to keep all responses together.
http://www.coping-with-epilepsy.com...svirus-6b-mesial-temporal-lobe-epilepsy-1124/
http://www.coping-with-epilepsy.com/forums/f22/emotional-trauma-stored-body-520/
I merged the two threads to keep all responses together.
Very informative, thanks! As soon as we have insurance again, I plan to get some test for adrenal exhausten (as there have been many instances of trauma) and also complete hormone panel tests. Many things may contribute I am learning more recently, and want to take actions with anything that may be contributing to my seizures and/or other issues.
Thanks All!!!
Thanks All!!!
Elaine H
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Bless You JLynn, you don't write too much, you just let it all out, and it sounds as though you have a lot to let go of!
I have Right Temporal Lobe Epilepsy, and you are right about that part of the brain being in the Limbic System, and responsible for emotions, spatial awareness, and short term memory. I like you, have the most incredible emotional transitions, I can be ecstatic with happiness one minute, and right down rock bottom miserable the next, it is very common with this type of epilepsy to have such incredible mood swings, they are very intense emotions aswell, I can cry at the drop of a hat.
I just had my right hippocampus removed 7 weeks ago, and I had lesion removed from the right temporal lobe 8 years ago, but I just don't seem to be able to shake off my seizures, I've been a lot better since this second op, but I'm still having the most amazing auras, do you have them?
The human brain fascinates me, and I think you will find this website fascinating and informative! Hope so, and best wishes to you!
Love
Elaine x
I have Right Temporal Lobe Epilepsy, and you are right about that part of the brain being in the Limbic System, and responsible for emotions, spatial awareness, and short term memory. I like you, have the most incredible emotional transitions, I can be ecstatic with happiness one minute, and right down rock bottom miserable the next, it is very common with this type of epilepsy to have such incredible mood swings, they are very intense emotions aswell, I can cry at the drop of a hat.
I just had my right hippocampus removed 7 weeks ago, and I had lesion removed from the right temporal lobe 8 years ago, but I just don't seem to be able to shake off my seizures, I've been a lot better since this second op, but I'm still having the most amazing auras, do you have them?
The human brain fascinates me, and I think you will find this website fascinating and informative! Hope so, and best wishes to you!
Love
Elaine x
RobinN
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Hi JLynn - Welcome
I am not a doctor but I believe so much in the power of nutrition and the changes that can happen neurologically that I have to suggest that be a place to begin. It is 100% in your control and over time you might see some positive results.
I think your tests will be able to tell you a lot. Adrenal fatigue is something I have been studying as well. It can cause a lot of unusual symptoms.
Also, you might consider being tested for metal toxicity. This too can also be a cause of what you speak of.
I am not a doctor but I believe so much in the power of nutrition and the changes that can happen neurologically that I have to suggest that be a place to begin. It is 100% in your control and over time you might see some positive results.
I think your tests will be able to tell you a lot. Adrenal fatigue is something I have been studying as well. It can cause a lot of unusual symptoms.
Also, you might consider being tested for metal toxicity. This too can also be a cause of what you speak of.
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Elaine, Robin, and thanks ALL
thanks much for the info. everyone, many things to consider, want to do all I can to make my life better, or best it can be.
Elaine, I think some of my aura's are seizures, like simple partials, maybe all I get is the aura part?
At least I think so, except two of my children recently told me that they witness me do a few things for a few seconds that I dont recall doing, while all I feel during those times is a jump or jolt feeling as I described.
I have an array of things that occur, and honestly not sure all what is an aura or not.
Usually before the "glitch" kind where I feel the wave or jump or whatever I am happy, maybe excited about something, usually speaking, or concentrating on something with a sort of high energy type feeling, then it happens.
Others which my doc says are likely simple partials are so.. hard to describe, they are sort of like the panic attacks, but different in some ways, this is why I say its hard to tell the difference often.
With these I suddenly feel that I will lose conciousness because my brain seems to try to go to sleep on me out of no where, but I fight my way to stay awake, and I do as far as I can tell, with this I suddenly get a knot in my stomach, feel like I may throu up, but I never do.
Everything around me looks strange, sort of like its all clouded and not real, and my body goes very limp feeling, I am disoriented, I get very very hot, and sometimes my heart races so fast, feels like it may beat out of my chest. Ive had to pull over driving and wait for it to pass, it usually ends with a bout of uncontrollable shaking that I thinks lasts about 3-5 minutes, but I havent timed it. During the first part I cant communicate well, other than a whisper, with not many words.
I have sat off the side of the road for up to 30 minutes chilling out when it happened driving many times. Although I got my licence back, I choose not to drive because I just feel I am a danger to others, even though I dont lose conciousness. I think these are aura's, but Im not sure really.
Im sorry that your surgery didnt take care of all your symptoms, that is much to go throu for that. Sounds like you relate with me on the unexplained emotional side of temporal lobe, and although Im sorry you go throu this, I appreciate knowing I am not alone.
I think the ones where things change shape, are actually seizures, not auras? I havent had as many of those ones recently thou. Sometimes for months on end I have a feeling everyday of what I think is derealization, then suddenly I have one great day where it is gone, and I know I am safe, and I might drive that day, but it doesnt happen as often anymore.
Do you have any aura's like these too? I know the neuro and I talked about these, so many things, but honestly I dont remember what all she said was what for certain. Anyway, the ones where things change shape and I sort of drop and lose my vision for a second, I am usually happy talking almost excited before those too.
Robin, I surely thanks you and will check into the diet thing. I have recently been trying to eat healthier, and started taking megnesium, as I read somewhere that it helps with many things, including seizures.
Write back friends, thanks for sharing
thanks much for the info. everyone, many things to consider, want to do all I can to make my life better, or best it can be.
Elaine, I think some of my aura's are seizures, like simple partials, maybe all I get is the aura part?
At least I think so, except two of my children recently told me that they witness me do a few things for a few seconds that I dont recall doing, while all I feel during those times is a jump or jolt feeling as I described.
I have an array of things that occur, and honestly not sure all what is an aura or not.
Usually before the "glitch" kind where I feel the wave or jump or whatever I am happy, maybe excited about something, usually speaking, or concentrating on something with a sort of high energy type feeling, then it happens.
Others which my doc says are likely simple partials are so.. hard to describe, they are sort of like the panic attacks, but different in some ways, this is why I say its hard to tell the difference often.
With these I suddenly feel that I will lose conciousness because my brain seems to try to go to sleep on me out of no where, but I fight my way to stay awake, and I do as far as I can tell, with this I suddenly get a knot in my stomach, feel like I may throu up, but I never do.
Everything around me looks strange, sort of like its all clouded and not real, and my body goes very limp feeling, I am disoriented, I get very very hot, and sometimes my heart races so fast, feels like it may beat out of my chest. Ive had to pull over driving and wait for it to pass, it usually ends with a bout of uncontrollable shaking that I thinks lasts about 3-5 minutes, but I havent timed it. During the first part I cant communicate well, other than a whisper, with not many words.
I have sat off the side of the road for up to 30 minutes chilling out when it happened driving many times. Although I got my licence back, I choose not to drive because I just feel I am a danger to others, even though I dont lose conciousness. I think these are aura's, but Im not sure really.
Im sorry that your surgery didnt take care of all your symptoms, that is much to go throu for that. Sounds like you relate with me on the unexplained emotional side of temporal lobe, and although Im sorry you go throu this, I appreciate knowing I am not alone.
I think the ones where things change shape, are actually seizures, not auras? I havent had as many of those ones recently thou. Sometimes for months on end I have a feeling everyday of what I think is derealization, then suddenly I have one great day where it is gone, and I know I am safe, and I might drive that day, but it doesnt happen as often anymore.
Do you have any aura's like these too? I know the neuro and I talked about these, so many things, but honestly I dont remember what all she said was what for certain. Anyway, the ones where things change shape and I sort of drop and lose my vision for a second, I am usually happy talking almost excited before those too.
Robin, I surely thanks you and will check into the diet thing. I have recently been trying to eat healthier, and started taking megnesium, as I read somewhere that it helps with many things, including seizures.
Write back friends, thanks for sharing
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oh, and this is interesting too.
Just during the past year, on three different nights, I awoke from a dead sleep in the middle of the night not knowing where I was, who I was, or why I was here. Even as my eyes adjusted I didnt know where I was, or even know my own name! I was in a complete state of unreal panic, like nothing I have ever felt before, awake or asleep. During what seemed to be about 15-30 seconds until my brain woke up all the way and my memory came back with it, I think I felt what it is like to have amnesia, and it one of the scarriest things I have ever experienced! I think I may have had a seizure in my sleep that caused this. I hope it never happends again.
Just thought I would share that too, as I am really curious to know if
anything like that ever happened to any of you?
Just during the past year, on three different nights, I awoke from a dead sleep in the middle of the night not knowing where I was, who I was, or why I was here. Even as my eyes adjusted I didnt know where I was, or even know my own name! I was in a complete state of unreal panic, like nothing I have ever felt before, awake or asleep. During what seemed to be about 15-30 seconds until my brain woke up all the way and my memory came back with it, I think I felt what it is like to have amnesia, and it one of the scarriest things I have ever experienced! I think I may have had a seizure in my sleep that caused this. I hope it never happends again.
Just thought I would share that too, as I am really curious to know if
anything like that ever happened to any of you?
RobinN
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Rebecca had an experience that began one morning after I dropped her off at school. She went to her locker before 2nd period (she figure skates during 1st period) and something happened. The results were amnesia that lasted for two months. Then it clicked back to real time two months later, while on a phone call with a friend. I found her curled up in a corner of her room, frightened as to what had just happened. Friends were telling her online that it was December and she "came to" back in October.
It is a part of our "wild ride" and the reason for so much research.
It is very hard to remain calm during episodes like this, but necessary, to find answers.
It is a part of our "wild ride" and the reason for so much research.
It is very hard to remain calm during episodes like this, but necessary, to find answers.